United to Conquer Sickle Cell Disease

SCDC Update, May 2019


 

ASH Sickle Cell Disease Centers Workshop - Applications Due by May 31

The American Society of Hematology (ASH) is hosting a workshop that will train health care professionals in some of the skills necessary to establish a center focused on the needs of adults living with sickle cell disease (SCD) on November 5-8, 2019. Tackling SCD requires a team effort, therefore, ASH is encouraging teams to apply to attend the workshop. Members of this team may include a business official from the institution where the center will be housed, health care professional who will work in the center, and a representative of the SCD community the center will serve. Workshop participants will come to understand the basic components of SCD centers, the process for developing a business plan and partnerships for advocacy, the ins and outs of operations, and approaches to measuring impact and improving the quality of care. The application is free, and travel and lodging expenses will be paid for accepted participants. Learn more and apply by May 31, 2019.

New England Journal of Medicine Discusses CDC’s Guidance on Opioids

Last month, the Centers for Disease Control and Prevention (CDC) released clarification on their 2016 Guideline for Prescribing Opioids for Chronic Pain. The clarification was on prescribing opioids to manage pain for certain conditions, including sickle cell disease. The New England Journal of Medicine highlighted this issue in a recent article entitled No Shortcuts to Safer Opioid Prescribing perspective piece. The authors state, “Unfortunately, some policies and practices purportedly derived from the guideline have in fact been inconsistent with, and often go beyond, its recommendations. Such misapplication has been reported for patients with pain associated with cancer, surgical procedures, or acute sickle cell crises. Such actions are likely to result in harm to patients.” Click here to read the full article. 

Research Funding Opportunity - Deadline May 31, 2019

All researchers are invited to take on the challenge of advancing cures for sickle cell disease (SCD). The Doris Duke Charitable Foundation is accepting applications through May 31, 2019, 3 pm ET to support research to advance curative approaches for SCD including gene modification and drug therapies aiming to safely and sustainably increase red blood cells that do not sickle. Competitive applications will receive awards with a start date of September 1, 2019. Visit the Sickle Cell Disease/Advancing Cures page for more details on the award competition.

ASGCT Annual Meeting Includes Sessions on SCD 

On April 29- May 2, the American Society of Gene and Cell Therapy (ASGCT) hosted their 22nd Annual Meeting in Washington, DC. The ASGCT Annual Meeting provides an international forum where the latest gene and cell therapy developments are presented and discussed. As the leading American conference focused solely on gene and cell therapy, ASGCT’s meeting convenes more than 4,500 professionals including scientists, physicians, and patient advocates. This year’s meeting included sessions pertaining to SCD, including a scientific symposium on “Genetic Modification of Stem Cells,” as well as oral sessions on “Gene Editing for Red Blood Cell Disorders,” and “Clinical Gene Therapies for Blood Diseases.” Be on the lookout for the Sickle Cell Disease Coalition’s summary of the key information from these sessions, written in lay-friendly language.  

Warrior University 

Warrior University is an online, curriculum-based educational platform, powered by the patients and caregivers of the Sickle Cell Community Consortium. All current classes, presentations, and workshops are classified into four warrior university pillars:

• Disease Education (ex. The Expert Patient Series)

• Community-Based Organization/Certified Community Advocate Training & Best Practices

• Research, Legislation & Policy

• Warrior/Caregiver Life Skills

The next series of Disease Education focusing on the National Heart, Lung, and Blood Institute (NHLBI) guidelines for evidence-based sickle cell care is coming soon. Visit www.sicklecellconsortium.org/warrioruniversity to learn more.

Shine the Light on World Sickle Cell Day - June 19

The Sickle Cell Disease Association of America (SCDAA) is collaborating with SiNERGe on “Shine the Light on Sickle Cell”—a 24-hour national awareness campaign to celebrate the 10th anniversary of World Sickle Cell Day on June 19! The sickle cell community is invited to join and host a local event on that day. If you are interested in organizing or attending a “Shine the Light on Sickle Cell” event in your community, please email ShineTheLightOnSickleCell@gmail.com. Click here for more information. 

Improving Emergency Department Care for Individuals with Sickle Cell Disease 

On May 9, 2019, the Emergency Department Sickle Cell Care Coalition (EDSC3) convened for its second summit - Improving Emergency Department Care for Patients with Sickle Cell Disease: Bridging the chasm through education and communication. During the meeting,16 organizations, including many SCDC member organizations, discussed the current weaknesses concerning the delivery of care in the emergency department for individuals with SCD and ongoing efforts to improve care in the emergency department for SCD. Participants identified next steps to improve care coordination and communication among providers across care settings treating for individuals with SCD. To learn more about EDSC3, click here

Explore NMDP’s Free Sickle Cell Disease Resources 

The National Marrow Donor Program® (NMDP)/Be The Match® has a variety of FREE sickle cell disease (SCD) and transplant-related resources for the SCD community and health professionals. Order a SCD Booth in a Box for your events during Sickle Cell Awareness Month Sickle Cell Disease Booth in a Box is a free toolkit that can be used at community health fairs, conferences, and other events. It gives you an array of patient-centered educational resources and giveaways to educate patients and health professionals about transplant for SCD. Learn more and reserve your Booth in a Box today. Questions about Booth in a Box? Contact Amber Ruffin, MPH: aruffin@nmdp.org.

Jason Carter Clinical Trials Program

The Jason Carter Clinical Trials Program (JCCTP) helps people with SCD find and join clinical trials. The free program offers: 

• One-on-one support from a clinical trial specialist to help navigate and search for clinical trials

• A simple web-based search tool to find clinical trials to treat SCD, reduce pain crises and improve care for other SCD complications

• Easy-to-read educational resources for patients and families to learn more about clinical trials 

• Access to financial assistance for travel expenses 

View SCD clinical trials here.

Scholarships Available for Individuals Living With SCD

The International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA) has established a competitive college scholarship program to assist students with sickle cell disease (SCD) who will be attending an institution of higher learning in the United States. IASCNAPA plans to distribute four $1,000 scholarships this year. Applicants must have a form of SCD and be enrolled in, or have been accepted by, a recognized and accredited post-secondary school, including college, university, trade school, or other institution of higher learning. Applications are currently being accepted through July 1, 2019. For more information, to contribute to the scholarship fund, or to apply for a scholarship, click here.

Annual National Convention- Call for Abstracts 

The Sickle Cell Disease Association of America (SCDAA)’s 47th Annual National Convention will take place on October 9-12, 2019 in Baltimore, MD. This year’s theme is: Sickle Cell Community Embracing Change Together. Last year, the convention was attended by over 600 researchers, physicians, nurses, social workers, and individuals living with sickle cell disease (SCD) and sickle cell trait. If you are a researcher, community-based member organization, physician, nurse, social worker, or someone working on behalf of people with SCD and their families, SCDAA would like to highlight your work at the 47th Annual National Convention. To be eligible, abstracts must meet guidelines and be submitted by June 3, 2019. Click here for more information.

Upcoming SCD Events 

 

Participate in ASH Research Collaborative SCD Community Engagement Workshops 

Join the ASH Research Collaborative for a series of fun and engaging Sickle Cell Disease Community Engagement Workshops this spring and summer, throughout the country for individuals living with sickle cell disease and their parents/guardians. The next workshop takes place May 18, 2019, in Atlanta, GA!  If you would like to participate, please click here to find out more!  All workshop participants will receive paid parking, a $50 gift card, as well as lunch, as a thank you for their time. Please see below for a list of upcoming community engagement workshops. If you are interested please email: SCD-CTN@ashresearchcollaborative.org.

City                     Date
Atlanta, GA       5/18/2019
Houston, TX      6/22/2019
Orlando, FL        7/13/2019
New York, NY    8/3/2019
Oakland, CA      8/10/2019
Washington, DC Metro Area    9/14/2019


NASEM Committee on Addressing SCD to Hold Open Session June 3

The National Academies of Sciences, Engineering, and Medicine (NASEM) Committee on Addressing Sickle Cell Disease: A Strategic Blueprint and Plan for Action, will hold an open session to hear from experts in the sickle cell disease (SCD) community on June 3, 2019, in Washington, DC. This open session will include various speakers addressing topics relevant to the Committee’s charge, such as opportunities for organizing and delivering health care for SCD, access considerations for innovative therapies, and patient perspectives on curative therapies. More information about this session, including the agenda and speakers, will be forthcoming. To register to attend in person, or virtually, click here

Foundation for Sickle Cell Disease Research Symposium

The Foundation for Sickle Cell Disease Research (FSCDR) is committed to supporting innovative research in sickle cell disease (SCD) to help maximize quality of life and improve survival for the generations of people affected by SCD. The next annual FSCDR symposium will take place June 7-9, 2019, in Fort Lauderdale, FL. Learn more and register today

SCDAA’s 6th Annual Walk with the Stars 

Sickle Cell Disease Association of America (SCDAA)’s 6th Annual 1K, 2K, and 5K Walk/Run With the Stars, will be held June 22, 2019, at Canton Waterfront in Baltimore, MD. Walk with the Stars is one of SCDAA’s largest events dedicated to finding better treatments and a cure for sickle cell disease (SCD). Every dollar raised goes towards preventing the complications of SCD through awareness, education, advocacy, and research. To-date, SCDAA has raised over $500,000 from this event for better treatments and improvements in the quality of health for individuals, families, and communities affected by SCD.

6th Annual Sickle Cell Patient & Family Educational Symposium

The Sickle Cell Community Consortium is thrilled to announce the 6th Annual Sickle Cell Patient & Family Educational Symposium (the Warriors Convention) to be held at the Hilton Dallas/Plano Granite Park Hotel from July 24 - 28, 2019. The Warriors Convention is the only national sickle cell meeting designed, created, and hosted by the sickle cell patient and family community. We are excited to welcome the Sickle Cell Association of Texas Marc Thomas Foundation, the As One Foundation, and Carol’s Promise Sickle Cell Foundation as our co-hosts!  This year’s theme is Sickle Siblings: Bonded by Blood.  Sponsorship opportunities are available.  

Sickle Cell Society UK Celebrates 40 Years 

Please visit sicklecellsociety.org for more information. 

SCDAA National Convention

Sickle Cell Disease Association of America’s 47th National Convention is scheduled for October 9-12, 2019, in Baltimore, MD. The National Convention is a four-day conference designed to address the multi-factorial aspects of sickle cell disease (SCD) and sickle cell trait. In an effort to advocate for improved quality of life for individuals and families affected with SCD and its associated morbidity and mortality, the conference fosters the exchange of the latest scientific and clinical information related to the disease. This is done through the offering of innovative symposia, training seminars, interactive panel discussions, and special events. Click here for more information. 

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